Wednesday, December 15, 2010

Max's Shunt - followup

Max had a follow up with the neurosurgeon on Dec 9 at CHOP.  The doctor says that he's fine and from our perspective, things went really well.  He isn't scheduled for an MRI until February, which is when we'll see the interior handiwork.  Should be interesting.

Some things that were different than we had expected :
  1. The shaved part of his head was not "small" as had been described to us in pre-op.  To be fair, it also wasn't large, but we were expecting something that would easily be covered by recombing the hair and it was too large for that.  Max does have rapidly growing hair so within a few days you couldn't see it from the front and 5 weeks later it is only easy to make out once you are close.
  2. The bulk of his pain stemmed from the muscle in his stomach on the side opposite from his incision.  Not sure if this something unique to Max but he still has occaisional complaints.
  3. He was alert after surgery far sooner than I had expected.  He could answer questions within an hour.  This was a welcome change as his early MRI's required sedation and it normally took him more than 2 hours to get to the point where we had any idea where he was and what was going on.
  4. He was able to move about sooner than expected.  By lunch he had made his way to the bathroom once. 
  5. Walking with full mobility and stamina took much longer.  He was home from school for the whole week because we just didn't think he'd be able to keep up with moving throughout the halls, even with an elevator key.  We had focused all of our attention on his head and had given zero thought to how cuting the muscle in his stomach would affect him.  As far as the impact to his life, the stomach had far more of an effect.  There really wasn't much to do with his head other than shampoo it.
Max, and nearly every other person we're aware of, is eargerly awaiting Christmas.

Monday, November 8, 2010

Max gets a VP Shunt

We left home at 3:45 am, got coffee'd and gas'd and made CHOP by 5:45 am.  Very quiet down here at that hour, but not desolate; we were patient number 3 for surgery.  We were called into the pre-op area at around 6:30 am and Max was asleep and on his way to surgery by 8 am.  His surgeon came out around 8:45 and told me that everything had gone quite well.  He was surprised that Max wasn't showing other symptoms as there had been a good deal of pressure built up. 

I was re-united with Max in the PICU where I found him huddled under many warm blankets but shivering and mumbling that he was uncomfortable.  He wasn't really awake enough to give me any details but we got him turned around on the bed and a little more comfortable.  At that point I got my first look at the scar that we'd recently been advised would be faily small.  It isn't small.  To be fair, it isn't large.  Clearly, it will take some time for hair to grow back in and cover this.  The scar is probably 3-4 inches long and sits inside a shaved area that is slightly larger than an egg (but I don't bake much so ...).  There is also a scar of the same size just above his belly button that I saw a few moments ago is bruising quite nicely.  One of the doctors that came in early said that would be painful for a while as they had to stitch up some muscle there.

Max was given fentynol (sp?) for pain earlier and recently had some Tylenol and Oxycodone.  He napped nicely both times and is still sleeping from does two.  When he's awakened they, of course, shine a bright light in his eyes, and do a brief neuro check that seems like it is pretty annoying but he just takes it in stride.  Right now the nurse was giving him an antibiotic while he seemed to be sleeping.  When she went to check his blood pressure on his left arm, he moaned and raised his right arm (which is his bp preference).  He's a remarkable young boy.

Thursday, November 4, 2010

The Pre-Surgery Visit

Today was mostly uneventful though we did learn some details of the surgery.  We now know that Max won’t have a significant part of his head shaved but also won’t be able to get a haircut for quite a long time after the surgery so he’ll be getting a shorter than normal cut this weekend.  We find out the rest of the aftercare details on Tuesday, before we leave the hospital.  The day of the surgery, Max will get a cup of “giggle juice” (Versed & Tylenol).  In the past that’s been enough to get him to sleep but we’ll see if that is still true.  They’ll use it before he gets the IV for the rest of the surgery so things should be smooth sailing for the 80 minutes or so that he’ll be in the room.  This update is short because we’ve got to head out for Boy Scouts to get his first “self-packed” bag checked before weekend camping starts tomorrow night.  While it is colder here than normal, the forecast is for the rain to stop early tomorrow morning so hopefully we’ll be dry

Wednesday, November 3, 2010

Max needs a shunt

Hard to believe that the Make-A-Wish trip was nearly two years ago. While a lot has happened since then, things have been going well so updating Max’s blog didn’t seem all that important. Sadly, things have changed a little bit. Max’s MRI back in July showed that his ventricles weren’t draining Cerebral Spinal Fluid (CSF) properly. At that time, we scrambled a little to meet with the chief of neurosurgery at CHOP about what was likely for Max going forward. He explained that while the MRI showed a clear and significant change, he didn’t believe that surgery was warranted because Max wasn’t showing any other symptoms. The most likely symptoms for Max would be a change in the color of the optic nerves, headaches, and/or dizziness upon waking in the morning.

This past Monday was Max’s 3-month follow up MRI. This time around, in addition to scanning his brain and eyes, his entire spine was scanned because he’s showing signs of scoliosis. The spine was just precautionary and to get an initial image of his anatomy in case treatment for scoliosis becomes necessary in the future. In July and now, the curvature of Max’s spine isn’t bad enough to warrant treatment but he’s close so he’ll be watched closely as he goes through puberty and growth spurts as that is when things could change a lot in a short period of time. Adding the spine to the MRI turned what was typically a 90 minute scan into a 3 hour and 15 minute scan. How Max was able to lay mostly still for that long and be inside the MRI tube is beyond me. Near the end he was clearly, and understandably, restless and would cross his legs. I’d hear the radiologist say, “Max, don’t move.” and he’d reply with a simple “Sorry.” That happened a lot near the end. When it was all over he jumped up off the table rather quickly causing both the nurse and I to worry that he’d collapse from being dizzy. He insisted that he was fine and actually started hoping a little bit. We tried to get him to stand still but he said, “I’ve really got to pee, it’s an emergency!” Apparently he’d been holding it for a little over an hour. It is stunning what he’s able to tolerate.

While he was in the bathroom taking care of things and getting dressed, I was visited by the radiologist who wanted to make sure that we wouldn’t be leaving the hospital. I knew something was up, but she wasn’t able to share, so I let her know that we still had two doctor’s appointments to go before we could leave. It was 12:45 pm before we were able to leave and we had to be at the first doctor at 1:30 pm so we ran down to McDonald’s. Max ate his entire meal in just under 8 minutes, which is a record for him. We were able to make it to the doctor slightly ahead of schedule so we got checked in and then started to play air hockey on the new iPad from work. That was fun but we only got in a few quick games before his doctor called us in. The doctor never calls us in. We typically go in with a medical student who does an initial exam. That person then explain their findings to the doctor and he reconfirms their results and tells us what it all means for Max, always making sure that Max understands. This time there was no medical student. Max was examined quickly and then we were asked if the oncologist had called yet. I told him that no, we hadn’t heard from her yet, but we knew something was going on. He said that the team had already talked about the MRI and we needed to go see oncology before going to the orthopedist.

Not knowing what is wrong, only that something is wrong, is such a crappy feeling. Because we’d added the spine, I was worried something new was going on. Thankfully, I wasn’t given a lot of time to ponder all the what if’s as we got in to see the neuro-oncologist within just a few minutes (something else that never happens). She started right in with the MRI, showing us that the ventricle on the right side was significantly changed from last time having become larger and showing more spill over than before. The good news was that the left side was smaller than it had been 3 months ago. We talked for a while about the implications of the change being only on the MRI with Max remaining without other symptoms. The concern expressed by the neuro-ophthalmologist is that Max's optic nerves might not show a change in color because they're already so badly damaged. The fear is that Max could completely lose his vision as his first symptom. The neuro-surgeon argued that would be very unlikely and that headaches or diziness would be far more likely but also acknowledged that Max will almost certainly need a shunt in the future.

At this point we're all agreed, Max included, that Max does need a shunt and that he should have the surgery soon, rather than wait for anything further to develop. This Thursday, November 4, the whole family will head down to CHOP for a meeting where Max will get a physical, have blood drawn for testing, and we'll discuss the entire procedure and answer all of the remaining questions. Then, on Monday, November 8, Max and Bob will head to CHOP for Max's surgery. We won't learn the time until the Friday before hand but we already know that Bob can stay with Max in the hospital and that Max will be there for at least 24 hours. The expectation is that he'll get to return home on Tuesday where the girls will have a feast of McDonald's, BBQ potato chips, and milk already prepared.

On Wednesday, Max will head to Lehigh Valley with Tracy for injections that he would normally have gotten on Tuesday. While these could be given at CHOP, Max would miss his monthly visit with everyone at Lehigh Valley. Also, Max will finally get the much coveted "overnight" bead for his necklace. He's longed for this since getting his first beads many years ago but had thus far eluded the qualification of an overnight stay at a hospital.

While Max is concerned about the surgery, he agrees that he needs it to make sure that other things don't go wrong. He is looking forward to the trip to Philly with the family tomorrow, his party/feast when he returns home, his overnight bead, and some super fantastic prize that is certain to be coming his way.